I’d like your help. If you have multiple sclerosis, would you be prepared to tell your story in a short Q&A style? If so, please take a look at the example below and just replace those answers with your own. Then email it to me, along with a photo if possible, to firstname.lastname@example.org. Oh, yes, the example below is my story.
How many years have you lived with MS?
I was diagnosed 14 years ago, in spring 2002 and, although I never made a note of the exact date, I think it was in April. At the time, though, the neurologist said he had gone back through my medical records and found evidence of me having it since my early 20s. So, I’ve had MS for 40 years but only diagnosed for the last 14.
How old were you when you were diagnosed?
49 years and about 5 months and I was two months into my new and, as it turned out, my last job. I was there nearly five years before it became obvious to all that I could not carry on.
Are you on any medication or use holistic therapies?
No, I have never been offered any MS drugs although I do have medications to help with some of the effects, such as urgent/frequent urination, constipation and pain. My MS Nurse did suggest vitamin D supplements but I didn’t bother. My wife and I have since moved to the south of Spain, so now I am getting plenty of sunshine to help my vitamin D level naturally.
How has your life changed since being diagnosed?
In itself, diagnosis changed nothing. I was the same person before and after. Since then, however, my life has changed beyond recognition but not all because of MS. Finishing work at the age of 55 was a major change triggered by MS but other major changes, such as divorce, remarrying, going on cruise holidays and moving to Spain were all choices. They weren’t forced upon me by MS or anything else.
Changes that have been due to MS include: coping with bouts of fatigue; serious mobility difficulties that severely limit walking, standing and just forget about stairs; taking medications for urinary and bowel problems; using a wheelchair to travel any distance over 10 to 15 yards; the installation of a full wet room that is built for now and with the future in mind and with wheelchair access; and installation of home accessibility aids such as a ramp outside and handgrips where needed.
Writing has been my life, as a journalist. Today, I use this skill and experience to write a regular blog, www.50shadesofsun.com, that attracts thousands of visitors and an even greater number of views.
What are the positives of having MS and how have you grown stronger?
Positives of MS? At least there is a reason for my symptoms; I cannot really see any other positive. I suppose it has made me appreciate what others do. Lisa married me knowing about my MS and both loves and cares for me. She is the love of my life. I am not sure that it has made me any stronger, except in my determination to carry on.
Any words of wisdom to others battling this disease?
Yes, some people choose to be sufferers, I don’t. I live with MS; it is an uninvited guest which causes problems that need to be overcome. My words of wisdom are to not fret about what you can no longer do; that is gone. Instead, remain positive, concentrate on what you can do. Live for the present and look to the future with hope.
What quote inspires you?
Not so much a quote, more of a mantra: MS does not mean giving up on life.